Today I am feeling like the Little Engine That Almost Can. I’ve been drafting a post about the Lipkin XMRV study, and my own views on whether it should be completed. After much work, and several thousand words, I’m out of steam. My goal is to post on the blog twice a week, but it will be just one massive post this week (I hope). So in the next couple days, expect a large post chronicling the story of this study and whether patients should expect the results to help advance CFS research.
I think I can I think I can I think I can . . . . .
The XMRV saga is worth a book in itself – so many different strands there were. The difficulty will be in keeping it under book length – good luck and I look forward to reading it.
Coupl’a things about Hillary’s veosrin of events. The mysteriously sudden shut-down of Kaplan and Holmes investigative interest occurred before the insurance companies had a hint there was going to be something big coming along. We were all convinced that local members of the chamber of commerce, who were mucky-mucks in the ski resort industry, must have complained their political friends that bad publicity was wrecking the local businesses, and to tell the CDC that in the interest of protecting the tourist economy at Lake Tahoe, that this mystery malady needed to have a lid put on it . pronto! You could just about put a date on this change of attitude.From what I heard, Kaplan and Holmes had been going through the motions of an investigation, but suddenly every action and expression seemed to shift from mild disinterest to total obstructionism and denial.Yes, the insurance companies did throw up a wall of disclaimers and denials, but that was long enough AFTER Kaplan and Holmes amazing epiphany that absolutely nothing strange was happening at north Lake Tahoe, that I don’t think they instigated the strange loss-of-interest. And not that Dr Jones deserves any credit for being right, but he did have a point about Myalgic Encephalomyelitis having a specific connotation and so it should not be used.We were still reeling with the discovery of a new virus, Human B Cell Lymphotropic Virus what you guys now call HHV6A . This new virus of HBLV was still highly suspect, and to simply apply ME to a similar illness which looked like it might have been caused by HBLV could make it appear that causality for ME was being implied. Having a newly identified virus as a possible culprit was a bit too specific to draw that kind of connection to ME. By this time, the community was so ballistic over the illness that we almost welcomed a trivializing term. A medically impressive one would have been an affirmation that the disease was truly serious, and would have scared the snot out of everyone, making a bad situation much worse. It almost seemed that the CDC had done us a favor by choosing CFS , just to take the heat off for a while.What should the name matter to a scientist?It is the ENTITY and the evidence which is important in the medical world. Not that we liked the name, but never dreamed anyone would seize one word as being the sole symptom, and forget the terrifying illness it represented. That’s not how science is supposed to work, so doctors would never do that . or so we had believed. That’s how I remember it, anyway.Ask Dr Cheney if this sounds like the way he recalls these events.